New German guideline for ME published today

Thanks, @Sly Saint, for your suggestions.

I don't want to be pessimistic, but writing to politicians haven't helped in the past. Many people did that. There's no interest at all.

 

Yes, there is no resistance.

You can call yourself happy to be in a position to hide from the Inquisition. The best you can do!
(And actually, that's what they count on: to construct social aid so painful that people choose living on the street over it, but at the same time to boast of the "best social system". But it's no better in the UK.)

 

It sounds like a lot of German patients are completely in the dark about getting screwed over by psychobabblers. And the psychobabblers are probably doing their best to keep them in the dark, with the language barrier also restricting access to good research. I've noticed something similar with "functional" disorders - a lot of patients do fully accept the labels, and the psychosomatic paradigm, even with things like seizures.

I'd suggest an awareness campaign of some sort, but in reality it would be more a de-programming campaign Maybe it's the sort of thing #MEAction could get involved with, or at least have some ideas for. Something that even scientifically illiterate patients and those with a lot of faith in authority could understand and accept.

 

@Valentijn, do you mean a campaign against psycho stuff, or an awareness campaign about ME and its biomedical background.

Sometimes I think people with ME in Germany really believe they have a psychosomatic ("functional") disorder, and that they like the psychological treatments. Some simply don't care. This makes an awareness campaign difficult - or doesn't it?

 

I just got into contact with the german „Lost Voices“ because it was statet in the Leitlinienreport, that only the deutsche Gesellschaft für ME/CFS objected to the new Leitlinie Müdigkeit. They were shocked, because they did not agree! (Fatigatio e.V., Lost Voices and DGf ME/CFS took part in the Process as patient organisations)

„Die Vorstände der genannten beteiligten Fachgesellschaften / Orgnisationen stimmten den Inhalten der Leitlinie zu. Die Deutsche Gesellschaft für ME/ CFS und die Deutsche Gesellschaft für Schlaffor- schung und Schlafmedizin haben der Leitlinie nicht zugestimmt und tragen die Inhalte als beteiligte Fachgesellschaft nicht mit.“

S.71 http://www.degam.de/files/Inhalte/Leitlinien-Inhalte/Dokumente/DEGAM-S3-Leitlinien/053-002 Leitlinie Muedigkeit/Methodenreport/053-002_Methodenreport_30.01.18.pdf

 

It actually backfired horrendously and resulted in the Robert Koch institute report.

 

Ah, I didn't know. Do you have more information about that?

 

Even that seems to be too difficult for DEGAM - writing a proper report. Degam should correct that. Do you know if "Lost Voices Stiftung" will contact Degam?

 

Yes they will and they will write a formal complain to AWMV.

DEGAM did not put any statement (besides the wrong agreement) from Lost Voices Stiftung in the report neither, which is very strange. Regarding Selbsthilfegruppen, Degam vilifies them, how it worked so amzingly in the UK:
Page 71
„4.2.3 Selbsthilfegruppen
Nach Publikation der Leitlinie 2012 erreichte uns ein Proteststurm durch Mitglieder von CFS/ME- Selbsthilfegruppen mit überwiegend gleichlautenden Aussagen sowie teils massiven Anfeindungen. Auch zum Ende des internen Überarbeitungsprozesses 2016 gab es vermehrte Anfragen und Vor- schläge.“

 

http://forums.phoenixrising.me/inde...erman-with-link-to-english-translation.43277/

 

Ohhhh, poor fellows, I feel soooo sorry

Again, one must never expect respectful treatment after highly disrespectful behavior. Very weird...

By the way, there's absolutely no problem that different groups sent similar content, quite to the contrary. Shows some organisation. That's how it works in politics.

Edit: I am certain that "massive hostility" is an exaggeration.

 

I've contacted ME Action and Jen Brea personally answered that they would be very interested in an article. Also someone else from ME Action sent their condolences. @Nina was so nice to offer to write the article with me and @TiredSam offered to translate. We're all set then.

 

Yes, it's so disrespectful that they completely left out everything the Lost Voices Stiftung wrote. The Deutsche Gesellschaft said the Lost Voices Stiftung did amazing work. Both organizations cooperate and are in regular contact and friends. The report also has a lot of other formal mistakes.

Whoo, dangerous militants - harassment with "questions and recommendations" about a guideline that directly affects them.

ETA: Sorry I forgot to tag you @cyclamen! We're already nine Germans (if I generously count @TiredSam ) here, awesome!

 

You can count me. I will be German soon. Brexit and all that. Passed my language test with 96%, passed my citizenship with 100% and broke the record at the test centre. For the citizenship test we had 2 hours, but it was on a Saturday afternoon and the examiner, wearing a Hoffenheim scarf and hat, said he wouldn't mind if we finished earlier. I suspected that he wanted to go to a football match. He then told a story about someone who broke the record and finished the test in 8 minutes (it was multiple choice, you have to learn 310 questions, they ask you 35 of them). For some reason when he said that "der Ehrgeiz hat mich gepackt" and I handed my paper in 7 minutes later.

Now I just have to go round to the town hall with all my papers and hand them in. Having ME, it's taking months to get round to, because I always have something more important that needs doing by tomorrow / next week when I'm fit enough to do anything. In fact it's taking so long that some people have suggested that I have a psychological problem and subconsciously I don't really want to become German. I'm not a huge fan of psychological explanations myself, but if I told them the truth I don't think it would help much.

 

That sounds like quite a transparent strategy to get to his football game, but apparently it worked. Congratulations on the new record!

 

Thanks. To be honest, the woman next to me did it just as quickly. She started to stand up, so I jumped up and barged her out of the way to hand my paper in first. I would have been devastated if she'd beaten me.

 

Was that part of the test? Preparation for how to behave in ski-lift queues.

Only joking.

 

So many excellent posts and hilariously snarky ripostes on this sadly dire topic.
Consider everyone "liked" X100.

Very tired and stupid today, but I had a random thought regarding legal action:
There is a PwME who is a lawyer, she has a blog and has sued (and won) for FOIA in the US. I believe she is a dual German/US citizen, but I don't know if she also is qualified in Germany in law. Anyway, I perfectly well know her name but cannot remember it at all right now. She is one of the lucky Ampligen patients.

Maybe she'd be interested in advising on this topic, if anyone can help out here with her name/blog.
Jeepers, these brain moments....

 

Hi @Allele, thanks for your post and for feeling with us!

I think you mean Valerie Eliot Smith and I have read her blog with interest in the past: https://valerieeliotsmith.com/about/

Will be back with my thoughts on legal action. Always takes so long to write in English.

ETA: No, sorry, I guess you meant Jeannette Burmeister, they're both lawyers with blogs on ME: https://thoughtsaboutme.com/quotes/
Yes, she says on her blog that she is licensed to practice law in California in Germany.

 

Something about sunbeds actually.